Last reply 2 weeks ago
Patient perspective talk to Drs + nurses

I’ve been asked to give a 30min talk on a MS training day for nurses and Dr’s about the patient experience of MS. If you were doing this, what sort of things would you been keen to include? It’s my opportunity to get health professionals to see MS through our eyes.

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stumbler
3 weeks ago

– the not knowing what the future holds;
– the unpredictable nature of the condition;
– the invisible nature of the symptoms;
– the restrictions caused by the symptoms;
– the inappropriate comments due to lack of awareness;
– the time taken to bring drugs to market;
– the decisions of NICE;
– the different treatment policies in England, Scotland and Wales.


dominics
3 weeks ago

– please don’t talk about lesion activity on MRI being a completely reliable indicator of disease progression
– please don’t talk as if the MS has suddenly gone away for a time between relapses. It is always there, always ‘working’ and it is never not there. Drugs may slow progress but they don’t just stop it
– discuss what is going in the referral letter after an appointment. Once in 25y I did not even recognise it as representative of the visit. In any way. I found that v stressful and had to write to the Trust seeking an explanation. A waste of everyone’s time.
– understand what the thought leaderas are advocating. Be prepared to explain what best practice is and why and then, if they are not following it explain why

– sounds like a moan. It isn’t. Do thank them as well as they do work very hard.

Let us know how it goes.


beefree
3 weeks ago

Detail: I have a brilliant but stretched neurologist, and a lovely but more empathy focused nurse. I find the technical level provided by the neurologist the most helpful and reassuring – for me, comfort comes from a deep understanding of what’s happening – and get frustrated when my nurse isn’t able to provide me with the level of detail that I’m looking for. It’s not the same for everyone, but I want reliable information more than I want empathy.

Services: I wish it was clearer what kind of services are available to me. For example, recently I noticed that I’ve started to lean to the right. I asked my ms nurse about physiotherapy now as a preventative measure, rather than waiting until I deteriorate to the point that it’s obvious as something that requires attention. Because it’s not obvious at the minute, the request is brushed aside. I think services should be better utilised as preventive measures, rather than only response measures, and that prioritisation should be less subjective.

Empowered to chose risk appetite: I feel a nagging sense of regret that I didn’t push harder to start on Lemtrada. I wanted to run hard and fast at my MS. I did a lot of research and understood clearly the potential risks, and felt that the chance of nipping the progress of MS was worth picking up a secondary condition. But I wasn’t empowered to make this choice.

Not really remitting: as @dominics says, it never really goes away. Every day I experience something related to my MS. Whether a touch of fatigue, or insomnia because of discomfort caused by tense muscles in my legs and back, or spasms, MS is always present and accumulating.


vixen
3 weeks ago

@beefree and @dominics, your posting has made me feel better ‘not really remitting…..never goes away’. I personally feel that my life has been one long relapse since being diagnosed. It’s good to know that others feel the same too.
@studentandms, as you’re in the U.K:
-the unfairness of postcode influencing quality of service
-how being open about diagnosis forever alters the perception of others, whether friends, work colleagues, employers
-how what you see on the outside can never reveal what’s going on inside, for example, people see you going to work and doing your job, when every day it’s a battle to do that

Maybe you could YouTube it and send a link? Good luck


glawsdan
3 weeks ago

Agree with @beefree about ‘detail’. I have two MS nurses, one talks ‘live for the day’ the other talks stats, research and gives probabilistic statements about the future. As a father of two young girls, the ‘live for the day’ comes across like ‘your future is screwed’ which as a Dad upsets me, not so much what it implies for me but how I can look after my children.

Dan


cameron
3 weeks ago

@beefree – just to say that neuro physio completely altered a) my view of MS and b) my ability to cope with it. I knew NHS services were too stretched even to request a referral, but having heard of a good neuro physio I chose to pay (current prices are around £35 for a one-to-one diagnostic session). A fantastic investment – on the basis of her analysis of my gait, I started to repair damage I wasn’t even aware of! In a few months after the MS diagnosis I had apparently lost hip control, which was worsening my posture and my walking. That was fourteen years ago. The secondary damage which she diagnosed was largely repaired through physio exercises and to this day has not worsened. She identified the precise areas of demyelination in my leg, hip and foot so could see which muscle groups were affected and how I could compensate. It’s similar to the way in which stroke patients are treated: the brain needs to be retrained to tell it how to react, because the normal messages aren’t either getting through at all or are delayed. It’s certainly not a quick fix, but at the very least it should stabilise you and improve how you get about. And it’s vital to work on damage before it worsens: one of her mantras is ‘disability comes in tiny steps’. In other words, by the time you really notice changes, it may be too late to correct them. PM me if you want more info. xx


highlander
3 weeks ago

@beefree
Maybe it’s just my Neuro team…..
But every time I’m given an appointment by them,
I’m always being asked if I know what I’m there for and why….
I don’t just rock up to their dept for a chat and a coffee.
Plus I’ve had a shower and I’ve got clean underpants and socks on too.
That must be a real give away.
Keep smiling.


jolea
3 weeks ago

Hi.
The wait between MRI scans and sometimes misleading does not always show activity.
NICE decision making.
Lack of awareness in the work force.
Emotional impact awareness.
LJl. 🙅‍♀️


mamawals
3 weeks ago

Respect patient privacy. Not everyone is open about their MS.


meg_kingston
3 weeks ago

Excellent – we need the medical profession to listen to us as much as possible.
I’m a regular at our local health board’s Dr training programme (my book is on their recommended list). I’m guessing that you’ll be one of many patients they see, so make yours memorable! Tell them what doctors / nurses have done wrong in the past – tell it like a “Best Man’s Speech” and give them a few anecdotes – remember that humour is a great teacher. And enjoy it! 🙂


studentandms
2 weeks ago

Thanks for all of your suggestions. I am planning on including several of the things mentioned above and am going to be using visuals and pictures to illustrate that which we go through on a daily basis. I’m also going to do an interactive exercise of getting them to do something that is anatomically impossible to give them an idea of what it’s like to look at a limb and not have any sensation in it, for example.

Thanks for your help. I will let you know how it goes!

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